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One step forward and two steps back! Darn Lupus!

My wife was diagnosed with Lupus way back in 1996 way before we met and were married. She had been in remission however and had never had a flare up...until now. We were married in July of 2005 and happily on our way to spending the rest of our lives together. Around November 2005 she started complaining of extreme fatigue and just not feeling well. Well she went to the hospital in early December of '05 and was quickly admitted as having full blown Lupus. Her kidneys were shutting down and her white blood cell and platelet counts plumetted. She suffered about three seizures from having vasculitis and all the damn medication (prednisone, cytoxan, cellcept, and more). On Christmas Eve she underwent emergency surgery cause she had no platelets and was just bleeding internally. She almost died in an otherwise simple operation that a healthy person could have gone home from in a few days. Well she pulled through and made a very slow recovery. Finally in February of '06 she was well enough to leave the hospital. We arrived home weary but happy we had made it through this ordeal. She continued going to dialysis as her kidneys were still not working but it was something we could deal with seeing as she had just cheated death a few months earlier.
Well amazingly her kidney function started coming back! She went from dialysis three times a week to two then to one then the day came when the doctor said she didnt have to do dialysis anymore. Thank the Lord! Had we finally come to the end of the long dark tunnel? I thought we had. Early on Easter morning I was awoken to find her in distress unable to breathe and coughing up blood. She was rushed to the hospital with a 106 degree fever and sever pneumonia! She was later medivaced to a major hostpital in the city where she remains today right back at square one recovering from pneumonia she almost died from and with dropping platelets again and it seems maybe another flare up! Damn! We have only been married 9 months and we are facing life and death. I feel frustrated, tired, sad. Like everything we achieved the past few months was for nothing. I feel like no one understands what our family is going through. Like no one cares. No one even knows anything bout this disease. I feel like giving up and dying myself. All the money goes to her medical bills. I tried applying for public assistance but they denied me saying I make too much money. Geez. I dont even own a house or have any substantial savings. I cant even fly over to the hospital to see her cause I cant pay for it right now. We live in Hawaii and the hospital is on another island from where we live. I don't know whats going to happen to us. I just needed an outlet to vent. I'm sure this is all old hat for most of you all and I'm sorry if I'm rambling on. Thank you for listening and putting up with me. Also I'd like to ask if any of you can include my wife in your prayers. Her name is Christina and I love her very much. Thank You All!

Hi Squidman22;
I know, almost exactly, how you feel and what you are going through. I went through almost the exact same things with my daughter. Except that I was allowed to stay with her, in her room, at the hospital. Like you, she was recently married when her illness sent her back and forth to the hospital and her husband became quite despondent.
I will pray for both you and your wife and keep you both in my thoughts. Please know that we are here at anytime when you need answers or just need someone to talk to or just need to vent.
Doctor's have become so much more proficient in the treatment and care of Lupus and how it wreaks havoc on the body. I pray that they are able, once again, to send your wife home in relative good health and that together, you and she are able to maintain that healthy state...for both of you.
I wish you many blessings and much peace. You are both in my heart and prayers.
Saysusie

Just a follow up on Christinas condition. She's pulled through and is off the ventilator and the pneumonia is clearing up! PRAISE THE LORD! I finally was able to talk to her. What a relief. Shes finishing the last round of plasmapharesis tomorrow and is expected to be released in the next week or two! The platelets and white blood cells have all normalized and are back to safe levels. She almost died. Thank you all for your prayers and supportive words. I turned to this site in my darkest hour. From the bottom of my heart, THANK YOU. I will continue to come here and contribute to this much needed forum.

I'm so glad to hear that your wife is doing better and seems to be on the road to recovery =) I will definitely keep you both in my prayers. Your wife is a very lucky woman to have such a strong and supportive husband in her corner =)

Squidman;
I am very, very happy to hear that your wife is doing better and, consequently, so are you.
Please continue to support her and, at the same time, educate yourself about Lupus. That will be your best defense in your efforts to maintain a reasonably healthy lifestyle for her.
Best of Luck to both of you

Squidman, That is awesome news. I am so glad to hear she is pulling through. I hope that continues and she is able to go home soon. I can't imagine how hard it must be for both of you to be separated like you are. You are an awesome husband, to find answers and such instead of pretending it will go away. A lot of us have been to hades and back with our spouses because they were in such a state of denial. You definitely have my respect in that regard. My own dh would look up nothing until he was "forced" in to marriage counseling and told flat out it wasn't going anywhere so he needed to deal with it. Things have been so much better since he heard that. So you gets lot of kudos for even looking up the word much less reaching out to others that have it.
Please keep us updated on Christina's condition. You guys are in my thoughts.